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Individuals with one of the relevant long-term conditions (asthma, COPD, diabetes, epilepsy, heart failure and stroke) are invited to take part in the survey by their GP practice. A small number of individuals will also be invited to participate in a short interview

Survey information

Who is invited to participate?

Individuals who are identified from their general practitioner’s (GP) database as having one of the relevant long-term conditions are invited into the study. The LTCs included are asthma, chronic obstructive pulmonary disease (COPD), diabetes, epilepsy, heart failure and stroke. The process of identifying an individual as a potential participant will be conducted by a computer program, which identifies people without making any of personal details known to anyone apart from the staff at their GP practice.

What is involved in participating?

To participate, individuals need to complete a questionnaire and return the questionnaire to the research team in an enclosed pre-paid envelope. The questionnaire will take about 20 minutes to complete.

Half on the individuals invited into the study will be asked to complete the questionnaire a second time, one year after they completed the first questionnaire. Individuals will be asked for their consent to be sent the questionnaire again after one year. If they consent to take part in the follow-up survey, they will need to their name and address to the research team. The personal information provided will be kept confidential by the research team.

What help is available if there is a problem?

There is a helpline run by the research team to help with any questions that may arise. Participants can contact the research team via a freephone number or via email. A telephone translation service is also available for participants who had difficulties understanding English.

Given the nature of this study, it is highly unlikely that you will suffer harm by taking part. However, the University of Oxford has arrangements in place to provide for harm from participation in the study for which the University is the Research Sponsor. If you wish to complain about any aspect of the way in which you have been approached or treated during the course of this study, you should contact the research team or you may contact the University of Oxford Clinical Trials and Research Governance (CTRG) office on 01865 857939 or the head of CTRG, email heather.house@admin.ox.ac.uk.

What will happen to the information given?

Any personal information (such as participant’s addresses) will be stored securely, and computer data will be password protected. Any personal information will only be accessible to the research team. Once participation in the study is completed, the files containing personal information will be destroyed. This means that it will not be possible to identify participants in any of the reports.

What will happen to the findings of the study?

The results of the study will be used to assess how helpful questionnaires are as a way of asking people about their health. The findings will be reported back to the Department of Health (London), published in the scientific literature and presented at conferences.

It is possible that authorised members of the University of Oxford may audit the study to ensure compliance with the NHS research governance framework.

As a result of the questionnaire, there will be no feedback to individuals about their health. However, a summary of the findings will be sent to participating GP practices to display. A summary of the study findings will also be displayed here

Interview Information

Who is invited to participate?

Individuals are invited to take part in an interview if they were invited to participate in the survey but did not return a completed questionnaire in 2010 or in 2011, or if the returned questionnaire is incomplete. Only a small number of individuals who were invited into the survey will be interviewed.

What is the interview about?

The interview will aim to find out the views of individuals with a long-term condition about the survey and the experience of completing health questionnaires.  It will also aim to find out how individuals think that such surveys could be improved.

What is involved in participating?

Individuals invited to participate will need to complete and return a consent form if they would like to take part.  The research team will contact the consenting individuals to arrange an interview at a convenient time and place. Interviews can be conducted in-person or by telephone.  The interview will aim to find out views about the survey and any ways it could be improved.  It will last no longer than 30 minutes, and will be recorded.  In the event that travel costs are incurred in relation to the interview, reimbursements will be made.

Will individuals selected to take part have to do so?

No.  Participating in the interview is entirely voluntary.  Individuals agreeing to participate are free to withdraw at any time during the interview without giving a reason.

What will happen to the information given?

Answers given in interviews will be transcribed analysed together with the answers from other respondents. Before any analysis is conducted, identifying information will be removed to ensure that information given cannot be traced back to specific individuals.  Any identifying information will be kept confidential by the research team.  The results will be fed back to the Department of Health and will be published in a report and in the scientific literature.  It is possible that authorised members of the University of Oxford or the Primary Care Trust may audit the study to ensure compliance with the NHS research governance framework.

What help is available if there is a problem?

Given the nature of this study, it is highly unlikely that participants will suffer harm by taking part. However, the University of Oxford has arrangements in place to provide for harm from participation in the study for which the University is the Research Sponsor. If a participant wishes to complain about any aspect of the way in which they have been approached or treated during the course of this study, they should contact the research team (YourHealth@dphpc.ox.ac.uk or 0800 9151 664) or they may contact the University of Oxford Clinical Trials and Research Governance (CTRG) office on 01865 857939 or the head of CTRG, email heather.house@admin.ox.ac.uk.